Exclusive: First Autistic Presidential Appointee Speaks Out

When Ari Ne’eman walked onstage at a college campus in Pennsylvania in June, he looked like a handsome young rabbi presiding over the bar mitzvah of a young Talmudic scholar.

In truth, Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat, organized by an autistic self-help group called Autism Network International.

Ne’eman’s deliberate use of the phrase “the autistic community” was more subversive than it sounds. The notion that autistic people — often portrayed in the media as pitiable loners — would not only wear their diagnosis proudly, but want to make common cause with other autistic people, is still a radical one. Imagine a world in which most public discussion of homosexuality was devoted to finding a cure for it, rather than on the need to address the social injustices that prevent gay people from living happier lives. Though the metaphor is far from exact (for example, gay people obviously don’t face the impairments that many autistic people do), that’s the kind of world that autistic people live in.

Now, as the first openly autistic White House appointee in history — and one of the youngest at age 22 — Ne’eman is determined to change that.

In December, he was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for people with all forms of disability.

Ne’eman spoke to Wired.com in July in his first interview with the media since his appointment.

Growing up in New Jersey as a kid with Asperger’s syndrome, Ne’eman struggled with an inability to parse the social cues that most “neurotypical” people take for granted — such as the little smiles, ironic eye-rolling and other forms of nonverbal expression — which made him the butt of endless bullying. Instead of being able to attend a good school in his hometown, Ne’eman was forced to attend a segregated school for special-needs kids located more than an hour from home, an experience that the bright, aspiring policy wonk found immensely frustrating.

Shortly after graduating high school, Ne’eman launched a national organization called the Autistic Self-Advocacy Network, which helps people network with one another to gain access to crucial support services and fight for their civil rights. Ne’eman’s nomination to the NCD was hailed as a milestone by groups like the American Association of People with Disabilities.

His nomination proved controversial, in part because some self-proclaimed allies of the autistic community think national dialogue on the subject should focus primarily on finding causes and cures so that autism can be prevented in future generations.

In March, the editor of an anti-vaccine website called The Age of Autism challenged Ne’eman’s ability to serve the needs of more profoundly impaired autistic people. “Do the highest functioning with the community,” wrote Kim Stagliano, “have a right to dictate the services and research that should be available for their less fortunate ‘peers?’ I don’t think so.”

Some of these online attacks escalated into threats. One anonymous emailer to a federal agency in Washington wrote that “assholes like Ari Ne’eman” should “have their tongues cut out” for suggesting that autistic people need respect, civil rights, and access to services more than they need pity and a cure. This conviction has made him a leader of the emerging neurodiversity movement, which Ne’eman sees as a natural outgrowth of the civil rights, women’s rights, and disability rights movements of the late 20th century.

In the wake of the controversy, an anonymous Senate hold was put on Ne’eman’s nomination. While this hold was in place, he was unavailable to talk to the press. But just before the coming-of-age ceremony at Autreat, the hold was dropped, and he was finally able to take his seat on the council. Now, Ne’eman says, he’s eager to clear the air about what he really believes about autism, neurodiversity, the controversy over his nomination, and what autistic people really need.

Wired.com: Much of the national conversation about autism in recent years has centered around statements by celebrities like Jenny McCarthy and Jim Carrey who claim that autism is caused by vaccines and other environmental factors, and can be cured by things like special diets, behavioral interventions, and alternative medicine. Is that the most productive conversation we can be having about autism as a society?

Ari Ne’eman: No. There’s a disturbing lack of attention to science in that conversation, but the problem goes deeper than that. What we have is a national dialogue on autism without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

Wired.com: The most prominent and well-funded autism advocacy group in America is Autism Speaks. Is this group not doing its job?

Ne’eman: The core of the dispute between autistic people and Autism Speaks is a problem that’s very common in the disability community: organizations that claim to speak for disabled people without including them in the conversation. Groups like Autism Speaks have taken tremendous amounts of money out of local communities, but haven’t included the people they claim to be serving in their decision-making structure. Promoting fear of autism and pity for autistic people may be good for their bottom line, but it actually hurts us in our efforts to have the kind of lives we deserve to have.

Autism Speaks raises lots of money through their walks for a cure, but only four cents on every dollar goes to services for autistic individuals and families. That’s surprising and concerning, given the kinds of challenges that people are facing in today’s fiscal climate with state budget cuts leading to the gutting of services. Instead, the money goes to advance Autism Speaks’ research and advertising agendas.

Obviously, funding autism research is very important. There’s a lot that could be done to significantly improve autistic people’s quality of life. But instead, groups like Autism Speaks have been prioritizing things like developing prenatal tests to detect autism in the womb. That doesn’t help the millions of autistic people who have already been born. Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need.

Wired.com: Many Wired readers work in the tech and software industries. How could they help improve the lives of autistic people?

Ne’eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily — so-called augmentative and alternative communication [AAC] — we’d have a vast improvement in the quality of life for autistic people and their family members.

We’ve already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won’t pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.

Second, I’d love to see research into ways of using social media to improve access for disabled people. If there was some kind of web-based tool or mobile app that enables people to flag buildings with “very good” or “very bad” access, it could spur a lot of positive social change.

Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors. The internet has proven to be very important for autistic people, because it’s given us a chance to connect with each other and start to form a culture of our own. We’ve barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education across the whole life span of autistic people — not just when we’re kids.

Wired.com: The news of your appointment to the National Council on Disability was greeted with praise from groups like the Autism Society of America and the American Association of People with Disabilities, but also stinging attacks. On one site, a mother of two autistic kids compared you to a “blind surgeon” who would be unable to do an effective job on the council. Were you surprised by the intensity of these attacks?

Ne’eman: I was, actually. The level of prejudice was pretty shocking. Some people relied on outrageous but all-too-familiar stereotypes to claim that it doesn’t make sense to have an autistic person on the National Council on Disability, such as the bizarre notion that autistic people are emotionless sociopaths. The weirdest accusation was that I got the appointment because my parents are Israeli — a reminder of the anti-Semitism that lurks behind many types of conspiracy theories.

But I think other people raised understandable concerns, and I want to engage with them. After my first meeting with the Interagency Autism Coordinating Committee at the Department of Health and Human Services, a woman told me that after hearing me talk about the dangers of over-prescribing psychiatric medication to autistic kids, she felt more confident that my work on the council will be relevant to her kid’s life.

For anyone who’s wondering if my service on the council will have a positive impact on the life of their child, I invite them to take a close look at what we’re trying to do. I think they’ll be pleasantly surprised. My intention is to be a voice for the issues that matter for all autistic people and our families, such as services, support, and education.

Wired.com: Some of your critics suggest that as a “high-functioning” person with Asperger’s syndrome, you present an overly rosy picture of life on the spectrum. You work in D.C., do a lot of public speaking and networking, and are obviously capable of things that someone who lives in a wheelchair or can’t speak cannot do.

Ne’eman: I know quite a few people in D.C. who use wheelchairs, and I know people who use AAC devices and work in public policy. Some of my mentors fall into those categories. So while I’d agree that there are many things I do that some other autistic people can’t, I wouldn’t say that it’s the fact that I’m not a wheelchair user or an AAC user that makes that the case.

I recognize that I’m fortunate in many respects and am able to do things that some other autistic people can’t do. But I would also point out that these things didn’t — and don’t now — come easily to me. I’ve been fortunate to be able to count on the inclusive culture of the broader disability-rights movement to help support me.

There’s a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don’t know anyone who thinks that way. Most of us have had deeply personal experiences of social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it’s much more productive for us to focus on how we can improve people’s lives than to keep presenting people as pitiable burdens.

No more pity. It doesn’t help anybody.

Many of the bad things that autistic people struggle with are things that happen to us, rather than things that are bad about being autistic. Why is that an important distinction? I remember reading a blog post from a parent who pointed to two news stories. One was about a mother who had murdered her autistic child because she couldn’t deal with the fact that he wasn’t normal, and the other was about a school aide who had abused a child. And the blogger said, “This is what autism is like. That’s why we need to find a cure.”

I find that kind of thinking despicable: One would think the fault there isn’t with autism, but with abusers and murderers! As long as we confuse bad things that happen to autistic people with what it means to be autistic, we’re not going to be solving the problems that autistic people face in any meaningful way.

Wired.com: What are the goals of the neurodiversity movement?

Ne’eman: The neurodiversity movement takes the concepts of self-determination and equal legitimacy that we as a society have applied to differences of race, religion, gender, sexual orientation, and other disabilities, and applies them to the fact that people are born with different types of minds as well. Instead of asking, “How do other people think we should be?” we’re asking, “What do we want for our own lives?”

The goals of the neurodiversity movement coincide with the goals of the broader disability and civil rights movements. We have a lot of solidarity between us. When a hold was put on my nomination last spring, I was grateful to have the support of groups like the American Association of People with Disabilities and the Leadership Conference on Civil and Human Rights. What we’re all trying to do is in the grand historical tradition of people fighting to achieve equal opportunity and control their own destiny.

When the Child Study Center at New York University launched its “ransom notes” ad campaign in 2007 — which defamed autistic people by depicting autism as a criminal who kidnapped your “real” child — the whole disability community fought alongside us. I think it was Ben Franklin who said, “We must all hang together or we’ll surely hang separately.” Right now, we’re trying to put that into practice in the disability community with coalitions like the Justice for All Action Network, a collaboration of the country’s leading self-advocacy groups.

Wired.com: What role do gatherings like Autreat, where autistic people create their own social space, play in fostering respect for neurodiversity?

Ne’eman: For a group of people who are socially isolated and ostracized, it’s necessary to have access to a culture in which we can socialize with others on terms that make sense to us, free of rules of conduct like having to make frequent eye contact or indulge in small talk. Having access to our own culture makes it easier for us to go out into an often very hostile world and face it with more confidence, with the knowledge that our differences and challenges are not things that make us wrong, just different.

Much of our time in the broader world is lived with a certain amount of fear. Day-to-day life in a world built for neurotypical people can be like walking through a minefield. There are a lot of social rules that we don’t understand, and tremendous consequences inflicted on us for violating them. Coming to a place like Autreat, designed by and for autistic people, feels like coming home. Being able to visit places like that gives us the base of confidence and strength that we need to then go out and change society to become more welcoming for all types of people.

Wired.com: For much of the 20th Century, autistic people were culturally invisible, confined to institutions or behind walls of social shame created by the misguided theories of people like Bettelheim. Now autism is much more visible. Clare Danes just won an Emmy for playing Temple Grandin, the autistic author and animal behavior expert. Books portraying autistic people, such as Marc Haddon’s The Curious Incident of the Dog in the Nighttime and John Elder Robison’s Look Me In the Eye, have become bestsellers. How do autistic people feel about this cultural shift?

Ne’eman: It’s better that people understand a little bit more about what autism is, but at the same time, it’s only a limited step forward. Now autism is considered an appropriate subject for “very special episodes” of popular TV shows. But you still have to have some kind of savant skill, or astonishing success story, to be worthy of representation in the media.

People shouldn’t have to learn about autism from Temple Grandin, John Elder Robison, or Ari Ne’eman. People should learn about autism by virtue of the fact that there are autistic people in their schools, workplaces, and communities. We’ll know we’ve really made progress when having autistic people in your life seems totally unsurprising.

Wired.com: What advice would you give to neurotypical people who want to become effective allies of the autistic community?

Ne’eman: At the political level, watch where your money is going. There are a lot of well-meaning people who think they’re helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities and ask tough questions like, “Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?”

Wired.com: What do you hope to accomplish in Washington?

Ne’eman: All across the country, we have hundreds of thousands of people on waiting lists for access to community services. People with disabilities don’t have the support we need to live independently, be employed, and participate in civic life. Instead, because of a bias in the way Medicaid is structured, many of us are segregated in institutions, which offer a much lower quality of life to disabled people at the same time that it works out to be much more expensive. It’s easier to get states to pay for an institution than to get them to allow people to access services in their homes. Making community services more accessible would be a huge game changer for all kinds of people with disabilities.

Passing one particular piece of legislation — the Community Choice Act — would accomplish that. The Community Choice Act would make it so that states would be required to pay for supports and services at home or in the community, but it would actually save money, because institutional placements are very expensive. There’s no reason not to do this.

Wired.com: In May 2013, a revised version of the so-called bible of psychiatry, the DSM-5, will abolish the diagnostic category of Asperger’s syndrome in favor of folding so-called Aspies into the larger category of people with autism-spectrum disorders. Why are some Aspies up in arms about this?

Ne’eman: There’s a lot of misunderstanding surrounding the DSM-5. The Asperger’s diagnosis is being combined with other autism-spectrum diagnoses into a single diagnosis. I’ve heard people worry that because the Asperger’s diagnosis is being eliminated as a separate category, those people won’t have access to services. That’s just not true.

The DSM-5 will simply recognize the fact that often what determines whether a person is diagnosed with Asperger’s, autism, or PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) is which doctor they see. Even when doctors are capable of accurately diagnosing someone on the spectrum — and many are not — there isn’t a uniform medical opinion about which diagnosis people should receive. This isn’t just a matter of semantics. There are states that will pay for services for people with a diagnosis of autistic disorder, but not for people with Asperger’s or PDD-NOS, even if the individuals have precisely same needs. That’s the problem that the DSM-5 is intended to solve.

Wired.com: Though you criticize groups like Autism Speaks for focusing on a cure, if someone offered you a pill to wake up tomorrow without autism, would you take it?

Ne’eman: That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That’s not reality.

As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it’s a silly idea around autism. What if we asked instead, “How can we increase the quality of life for autistic people?” We wouldn’t lose anything by that paradigm shift. We’d still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.

But the current bias in treatment — which measures progress by how non-autistic a person looks — would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

Image: Paul Morse/Wired.com

Steve Silberman is a contributing editor of Wired magazine. His blog at the Public Library of Science is NeuroTribes.

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